It's about quality of life rather than length of life': using and refusing policy discourse in the lives of children labelled with life-limiting and/or life-threatening conditions

This chapter focuses on the policy discourse in England that shapes the lives of children and young people who are thought to have a shorter life expectancy than their peers: children and young people with ‘life-limiting and/or life-threatening conditions’. We begin the chapter by reflecting on the wider policy context for disabled children and young people over the last decade or so. We describe a period of rapid policy change which, sadly, seems to have had little impact on improving the lives of disabled children and young people. We reflect on the principles of disabled children’s childhood studies (Curran and Runswick-Cole, 2014) which led us to consider how young people themselves make sense of the policy discourse applied to them as part of a wider research project we are undertaking. This project Living Life to the Fullest: Life, Death, Disability and the Human (ESRC: ES/P001041/1) explored the hopes, dreams and aspirations of disabled children and young people with what are termed ‘life-limiting and/or life-threatening conditions’. Our developing analysis is influenced by an understanding of biopower as a regulatory force which demands that both living and dying occur in prescribed ways (Berlant, 2006). We conclude by considering how young people’s insights can help us - and policy makers - find a ‘better’ way to refer to this particular group of disabled children and young people that honours their lived experiences, futures and human rights but also acknowledges their unique relationship to death and dying.